August 16, 2013 - Some patients experience what’s been dubbed “white coat syndrome,” which involves extreme anxiety or increased blood pressure whenever they have to be present in a clinical setting. It can be hard for clinicians to reach those people with important information about preventive care or disease management because they’re so agitated.

This is one situation where lay care guides or navigators can be useful. They’re less intimidating, more like a peer than an authority figure. No white coat, no anxiety. That gives them a good opening to lead a patient through the increasingly complex health care system. Those care guides can also help break down other barriers--language, culture, socioeconomic--that may impede people from getting the care that they really need.

These are some of the findings that Richard Adair, MD, was pleased to discover in a recent study on the effects of using a lay care guide as part of a primary care team working with patients with certain chronic diseases.

Adair and his team studied 2,135 patients, some of whom worked with lay care guides--that is, guides without a medical or nursing background--and some of whom did not. They found that the patients who worked with care guides were much more likely to meet their health goals than the patients who did not.

“We wanted this to be a nonstressful experience for them, and to put it in language that they could understand,” said Adair, a primary care physician with the Minneapolis-based Allina Health System.

The results of the study were recently published in the Annals of Internal Medicine. And since the study concluded, Allina Health has continued to use lay care guides with chronic disease patients and may expand the program to include patients nearing the end of life or at increased risk for hospitalization.

The success of this type of program could become increasingly important, given the growing number of people in the United States who are living with one or multiple chronic conditions. Approximately 81 million Americans may be living with multiple chronic conditions by 2020. Already at least 65 percent of the Medicare population has at least two chronic conditions.

Supplement or replacement for nurses?

Some nursing leaders have reservations about the use of lay care guides rather than registered nurses, however.

Linda Hamilton, BSN, RN, worries about the possible effect of adding yet another person to the mix of people that patients see.

“It’s another level of ambiguity to our already fragmented health system,” said Hamilton, president of the Minnesota Nurses Association (MNA).

For example, she said, this extra layer could be very confusing to people like the elderly, particularly if they’re already uncertain about navigating the complexities of the health care system. If someone calls them from the clinic, they may assume that person can answer all their questions about their health, their meds, their symptoms and so on.

“These are the patients who need one person to deal with, and that person should be able to answer all the questions,” she said, adding that a nurse has the training that would enable her to pick up on red flags that an unlicensed person would not notice.

Adair does not view lay care guides as replacements for registered nurses. Rather, he sees them as people available to help patients with certain questions or concerns when nurses and doctors are already stretched very thin.

“They are supplemental to nurses and doctors,” he said. “They have different skills and different approaches, and the combination worked nicely.”

Adair acknowledged that the nurses and doctors at the Allina clinics initially had reservations about the non-clinical care guides, as well.

“I think the nurses were worried that these people would overstep their bounds on scope of practice,” he said. “And we worked very hard on that. We gave them very strict scope of practice guidelines.”

Adair recruited some guides who were bilingual so they could reach patients who didn’t speak English. All of the guides were given very specific health information during training that they could pass along to patients.

And while they did regularly contact patients, the patients could also initiate contact with them. That accessibility proved to be very successful, noted Adair.

For example, he was frustrated when he couldn’t seem to help one patient lower her blood sugar levels. The patient tended to clam up in front of him, but she confessed to her care guide that she was terrified of needles so she wasn’t taking her insulin. Her care guide immediately notified him so he could switch her from insulin injections to oral medications.

Lay guides not a new concept

There are precedents for non-nurse patient guides and navigators.

For example, Harold Freeman, MD, a New York City surgeon who is credited with developing the patient navigation model, started with lay people. In 1990, he pioneered a program to help guide African-American women with breast cancer, and he chose people from the community who were sensitive to cultural issues and barriers. Today, his institute continues to train people to help patients move along the very complex continuum of care, negotiating any logistical or financial hurdles that might come up along the way and impede their access to care.

And a program sponsored by the National Cancer Institute in 2004 in western Pennsylvania used health care professionals who were not nurses to work with underserved populations, including the Amish, and help them access the services they needed.

MNA’s Hamilton said she absolutely sees the value of lay people in certain roles in health care. But given the success of so many programs that utilize nurses in working with patients with chronic disease, she questions why a lay guide would be anyone’s first choice.

“You have to look at the illness and the patient,” she said. “What do they need? You don’t give them more than they need but don’t give them less than they need.”

Meanwhile, Adair noted that nurses and physicians are being asked to do more and more in the same amount of time. So why not use care guides when appropriate? “This is someone who can help us,” he said.